I was 59 when I had my stroke in December 2018, just a few days before my 60th birthday. The diagnosis from a CT scan actually showed what appeared to be three separate ischaemic strokes, with two small brain scars and one large – confirmed by MRI on Christmas Eve at Great Western Hospital, Swindon.
I was fairly fit, doing lots of dog walking, gardening, tennis, swimming, acting and playwriting – I guess I might have been a few pounds overweight as I’d just finished an MA in Archaeology at the end of September, and that had lots of sitting down and writing. After I’d finished I celebrated by joining in a dig locally (in Wiltshire, and in the October) and then flew to New York at the end of November, early December.
I’d had three visits to the GP surgery with ‘problems’. In mid-October, after the dig, I had a blocked eardrum causing pain and a couple of really dizzy spells. I did go to a doctor, who prescribed antibiotics and painkillers. In early November I went to the dentist for a filling on a cracked tooth. Unfortunately this was overfilled and caused a lot of pain, which in hindsight may have masked some other symptoms. Then in the middle of November I went to GP as I was getting double vision. I could only read the centre part of any writing. Since I was writing a play at the time and had real problems with ordering my writing and my spelling went ‘off’.
My GP suggested I went to optician or an eye clinic. I went to my optician the following day and she apparently wrote to the surgery and eye clinic to say I should have follow up tests. I was neither told at the time, nor was I recalled to eye clinic. I heard over a year later that they couldn’t read her writing!!
I did have a lovely time in New York, despite the tooth pain, but nothing else really troubled me. A few days after I got home I became very confused and lost much of my speech had word finding difficulties. I managed to get another GP appointment 3 days later and the GP suggested it could be confusion caused by diabetes and to attend a diabetes clinic in January the following year. However I called my friend that evening, who had been party to my woes, and her husband who is an osteopath, and they told me to get myself to A&E for an MRI straight away.
Nobody at any time had mentioned stroke.
I called the GP next morning and demanded to be referred, which he did. I spent the day at A&E, had a CT scan, which was diagnosed as a stroke. I was put on a raft of tablets; clopidogrel, amlodipine and atorvastatin and sent home with MRI appointment for 24th.
I was lucky in one way. I had no obvious physical problems, although I have had subsequent balance issues and general weakness in my hands, but I couldn’t read or speak properly and had severe cognitive issues and general confusion.
My consultant informed the DVLA and booked me in for ophthalmology tests. I have lost peripheral vision, but after nine months I passed the Specsavers eye test and after ten months had a driving assessment – which I thankfully passed! Although he did say I was driving a bit aggressively – Ha!
I saw a speech therapist who said I was not bad enough to be referred and I had stroke nurse home visit after twelve months. The GP wouldn’t/couldn’t refer me for any neuro/psychotherapy. The GP also initially refused to write a letter for the insurance company to get my holiday to India (60th birthday treat) cancellation saying I was fine to fly. It was only when I had several heart monitor appointments that she would sign me off.
I lived in a fog for several months, with lots of tears, depression, total loss of confidence and felt very ‘forgotten’. My work was words and people and I could not cope with either.
After several months I managed to re-learn to read.
My speech is almost back to normal and I’m not embarrassed using the wrong words (still) and make light of it. Although as a playwright it sometimes hurts to think I might appear so stupid.
I struggle with any numbers and have had finance issues which has led to several fines/overpayment/underpayment, etc. Lockdown was great – I had no expectations of me. I have bees and a garden and felt very unpressured. I am fighting to do my work (writing plays) but get very frustrated that my brain doesn’t work. I’ve been trying to write a play for two years about my bees. I’m now on Version 5.2!! I will get there!
How do I feel about not being diagnosed correctly? I feel angry – and defeated. I wish I had known more myself. I had no ‘normal’ symptoms. I would have pushed harder earlier if I’d been aware that a stroke is not just all about FAST (Face Arms Speech Time). So my one key lesson would be to listen to what your own body is telling you. I wish I had.
I only discovered Different Strokes a few months ago. My computer skills have been seriously curtailed. I enjoy reading other positive and negative experiences! I have no-one around me to talk to about my struggles who might understand, so I have dipped in a couple of times.
My aim is to finish this play!! It will be my last I think. I’ve booked the dates for rehearsals so that I have a deadline to work to. I need to feel I have achieved something. I think my advice other survivors would be to be honest about you are feeling, both emotionally and physically. Tell people about strokes! The more we can educate people the quicker we can diagnose and help recoveries.
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There are 100,000 strokes in the UK each year with 1 in 4 happening to somebody of working age or younger. Different Strokes aims to promote independent stroke recovery and help these younger stroke survivors reclaim their lives.

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